Posts: 10

Topic: Radioembolization for unresectable tumors

My wife Valerie was diagnosed with CCC on 31 October 2006. The doctors in Honolulu where we live said that nothing can be done. We went to Sloan-Kettering in NYC and Dr. Ronald DeMatteo the heir apparent to Dr. Leslie Blumgart (the God of CCC) and a great surgeon, tolkd Valerie that there was nothing she could do, no treatment other than palliative chemo: death sentence. We asked if they ever shrink the Klatskin tumor with radiation and chemo and then take it out. He said he "had never seen a Kaltskin's tumor shrink. We went home with those words. The next phase is a long story. Let me cut to the end and then fill in the middle.

On July 19, 2007 my wife was given an arteriogram by Dr. Andrew Kennedy at Wake Radiology in Cary, North Carolina. easy to find on Google. On July 25th Dr. Kennedy injected radioactive microspheres into the Klatskin's tumor in a 1 hour outpatient procedure. A little acid reflux was the only side effect. I will let you know the outcome in about a month, but Dr. Kennedy has done hundreds of liver trumors and about 13 BDC tumotrs. He started out at Maryland where he encountered some BDC's and other doctors asked him why he was wasting his time on that disease. He knows BDC and he has pioneered radioembolization in the US and particularly against the solid adenocarcinoma tumors in the pancreas, bile ducts and liver.

We had heard that this was a controversial and "dangerous" procedure. If the injected radioactive microspheres "leak" outside the tumor, they create havoc. Dr. Kennedy explained to us that thet do a dye test before the microsphere injection as "test run" to see if there are "leaks" and then during the procedure, they can plug any leak. Plus they watch the actual microsphere injection and can deal in real time.

We think that Dr. Kennedy has just destroyed Valerie's Kaltskin tumor in a 90 minute outpatient procedure with no side effects.

So here is the rest of the story.

After being totally bummed out by Dr. DeMatteo ( a liver "surgeon") in November 2006, I hit the Lance Armstrong trail and found a Data Collection Study (DCS) at washington University in St. Louis that was focused on BDC. They were trying to gather statistics to support the Mayo Clinic research that predcted 82% cure with neo-adjuvant "sanitizing" chemo and radiation followed by liver transplant. Mayo is the pinnacle of centers for disease of the bile ducts. Not BDC but disease of the bile ducts. Since 1993 they have started to track their large aptient population with bile duct diseases. They noticed that an alarming %-age of them also contracted BDC.

We are all told that if you remove the tumor with good magins: IT COMES BACK!

We are all told that if you remove the tumor and the entire liver and transplant a new disease-free liver: IT COMES BACK!

Liver transplants for BDC are illegal in New York. Why waste a liver?

So my wife was accepted in the data collection study in St. Louis. The Dr. DeMatteo counterpart in St. Louis is Dr. William C. Chapman - top 5 in the ranks of liversurgeons in the world. Fabulous doctor. He took us into the Mayo protocol and said that he thought they could "do better" with CCC patients.

The criteria for transplant under the Mayo protocol is "no" metastasis. They do Gemcitabene for 6 weeks, IMRT and 5-FU (low dose as a radiosensitizer - not a chemo drug) and then they do a laparotomy and lots of scans to make sure that no spread has occured.

Valerie made it all the way through this rigorous program. In June she went on the transplant list with UNOs hoping to get into the 80% cure rate from Mayo.

They had her tied off for transplant on June 30th when they found seedlings on her perioneum and she was not given a transplant. Back to sqaure one. We started over.

On July 25th we think that Dr. Kennedy destroyed the Kaltskin's tumor. Since the disease has metasasized, Valerie now must go on some form of systemic drug therapy. We are headed to the University of Michigan to Dr. Mark Zalupski who is doing a CCC trial with a new drug called DAVANAT.

We don't understand why no one told us about the work of Dr. Kennedy at wake radiology. He is famous in the major cancer conferences. I just read a study from Italy where they had tremendous success with the radiembolization technique using a chemo drug in the microspheres against BDC.

Our suggestion is that as soon as you are diagnosed with cholangiocarcinoma you call Wake Radiology and send you records to Dr. Andrew Kennedy.

Then call washington University in St. Louis and ask for Dr. William Chapman.

Re: Radioembolization for unresectable tumors

Dear Wayne, My husband was diagnosed with a klatskin tumor in June 06. He underwent an attempted resction but it was not possible because too much bile duct would have had to be removed. They checked him all out ,removed his gall bladder and closed him up.They thought his lymph nodes were involved but the biopsies all came back negative so he had no mets. After recovering from that he went through 5 weeks of IMRT radiation along with Xelada, followed by brachytherapy. In December they did his first followup scan and they said they couldn't see the tumor any more. We then went to the Univ. of Pitts basically to get a second opinion.They didn't trust the OSU scans, they figured they would see something on their own scans since they felt they had better"technique" and they came back to us with the same result. They said the tumor is gone. Since then he has had an MRI every three months and it continues to simply show an area of dead tissue and no active tumor. He does have a stent but I am even hoping that if the tumor does not start coming back that they will remove it since infection is always a problem with those.I really hope your wives procedure is effective. I have never read of anyone having the results my husband has had and I would really like to read about more people doing more than just chemo! Ecspecially with the klatskin. They really don't even try to give you hope if a resection is not possible. Keep us informed of her progress. All information people have is greatly appreciated! You just never know what may help. Take care. Mary

Re: Radioembolization for unresectable tumors

Hi Wayne,

I have found your story extremely useful and also an eye opener of what possibly it is to come.

My sister and I found out 3 weeks ago that our dad,71 years old, and best friend has cancer of the gall bladder and bile ducts. This has been devastating for us. He had an operation 1 week ago but unfortunately it was unresectable (I understand that means that they couldn't take it all out). I understand that they have cleaned a bit around the area but have left everything including the gall bladder. It appears for the moment that the liver is only affected in the area adjacent to the bile ducts and that the nodes around are not affected. We are wondering what to do next.

We have heard of the Mayo and MD Anderson clinics. But now through your story we are now wondering whether we should contact Dr Andrew Kennedy of the Wake Radiology onchology centre in the US first. Could you tell us a bit more about your experience with him? Do you think my dad would be a candidate for the treatment Valerie had?

We are also wondering what treatment is best to follow aside from procedures. What treatment is Valerie following now? We are confused because there are so many Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial conducted with this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise!

Re: Radioembolization for unresectable tumors

In August of this year, without any previous symptoms, and only 4 months away from a wonderful retirement was diagnosed with cholangiocarcinoma - stage iv.We had a contract for the sale of our home when this monster disease struck.So we, like so many of you were totally confused as to the path to take. We first went to Hackensack Hosp. where we were being treated like cattle; there were so many sick people in such a small space and a hospital staff overwhelmed. The oncologist there Dr. Jennings who we liked very much gave cholangiocarcinoma the official name of the disease. Since my husband ultimately has bile duct cancer with tumors in both of his liver lobes, basic chemo was recommended. We were not satisfied with that diagnosis.

Meanwhile, I had contacted Sloane Ketterning in NYC and saw an Indian Doctor - Dr. Jhawer. By reputation, I thought Sloane was the place to go Dr. Jhawer offered us the same type of treatment as Hackensack Hosp. and told us their were no trials my husband could join, as there were not enought people alive to test. Upsetting to say the least.

Next, we contacted The Cancer Treatment Center of America in Phila. We were impressed with their heart and made an apointment to see them mid-Sept. Their approach is to treat the whole person - not just the cancer. My husband had a direct infusion of chemo into his liver for 5 complete days. He was bedridden and unable to move the whole time (the catheter was stitched in place). Then he was sent home for three weeks to recooperate and we again go back next week (Oct. 24th) to see if the tumors have shrunk. We have been extremely happy with this facility and the personnel there. Everyone truly cares. Plus, massages, raki, pain management, nutritional management, psychology, naturalpathy, and pastoral are all included in the treatment.

Has anyone else had direct infusion?? Results?? We are hopeful; but the person upstairs makes the final decisions.

Re: Radioembolization for unresectable tumors

Re: Radioembolization for unresectable tumors

Sorry for the delayed reply. Dr. Kennedy is fabulous and has a lot of experience with cholangiocarcinoma. He has done many liver tumors and my wife's unresectable Kaltskin's tumor is now out of commission. It took two hours and has almost no side effects. Send scans to Kennedy and he will quickly respond if treatment is possible.

Re: Radioembolization for unresectable tumors

Question on this thread: Is direct infusion the same as chemoembolization?

They are similar, but not the same. They are both done through the femoral artery, with the chemotherapeutic agent injected directly into the liver through the hepatic artery. With direct infusion or HAI (hepatic artery infusion) the chemo is injected over a period of hours or even days. With transarterial chemoembolization (TACE), the chemo is injected as a single shot, which is followed by a small globule of "fat" to lock the chemo in place inside the tumor. You can read more details about these two procedures at the MD Anderson website. There are benefits and drawbacks to either procedure.

Re: Radioembolization for unresectable tumors

You can go to www.wakeoncology.com for information on Dr. Kennedy. Sorry I just jumped in, but Charlie and I met with Dr. Kennedy last summer and we really liked him and the promising Theraspheres treatment. We were trying to get our insurance to cover the Theraspheres until we were told of resection surgery at UNC Hospital. I'm still wondering if Charlie can have this procedure sometime in the future.

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